Addressing barriers to providing optimal end-of-life care

Physicians providing care in the community and long term care (LTC) facilities in Alberta, Canada, were interviewed to determine what they perceived as barriers and facilitators to providing optimal end-of-life care.1 Among their concerns, they reported motivational barriers related to families, citing the family’s lack of knowledge about frailty, unrealistic care expectations and expressions of grief as barriers to providing optimal end-0f-life care. Also, providing optimal end-of-life care was difficult if the physician and care team had limited knowledge of the person’s spiritual, emotional, and mental health needs.

Providing optimal care at end-of-life is essential. However, it becomes near-to-impossible when end-of-life care is not discussed until end-of-life.

The need to provide excellent end-of-life care for all people is acknowledged worldwide. The issues arise in knowing how to prepare for optimal end-of-life care.

Fortunately, the recommendations in the Framework on Palliative Care in Canada2 in part, address the barriers mentioned in the research. The recommendations of Harasym et al, (2020) from their research align well with the principles of palliative care and include:

  • Using standardized tools to help address understanding of pain with dementia
  • Assessing routinely to help prevent crisis
  • Engaging spiritual care providers who also had some medical knowledge would help to support family
  • Improving staffing ratios to ensure caregivers were available to provide more intensive end-of-life care

These strategies will help the care team to support the person and family in providing optimal care at end-of-life. However, it becomes very difficult when end-of-life care is not discussed until end-of-life.

Preparing for optimal end-of-life care is what a palliative approach is about

Integrating a palliative approach to care early in the person’s illness, possibly when they are still living in the community, enables appropriate information sharing with the person and family about the illness and helps them to understand what to expect. With a palliative approach, information sharing and serious illness conversations can be approached gently over time, instead of in urgent situations when the person is at end-of-life.

Integrating a palliative approach also means that palliative care is not the sole responsibility of the specialist, in this case, the physician. The entire care team—PSWs, nurses, socials workers, care directors, and so on, are involved in supporting the person and family through the person’s illness and death. Together with the family and community, the team gathers information about the person, their beliefs, values and goals of care. With this knowledge the care team is better able to meet the person’s physical, spiritual, emotional and mental health needs at end-of-life. And with a palliative approach, care planning conversations that occur long before end-of-life in both formal and informal ways, can help decrease fears and help prepare the person and family for future changes.

Educating all care providers

One thing that 2020 has made apparent is that health care is woefully unprepared to support greater numbers of people living and dying with life-limiting illness. The predicted number of Canadians with dementia who will need care in the year 2030 is astounding – an increase of 66% to an estimate of 937,000 people.

It is possible to prevent or address the barriers mentioned by Harasym et al (2020) and provide optimal end-of-life care—by educating all members of the care team, including physicians, in providing basic palliative care and integrating a palliative approach. To meet the care needs of people in the coming years, all members of the care team will need to be able to integrate a palliative approach now. Today. Tomorrow and next month and next year.

This means educating all caregivers to be confident and competent in preparing to care, opening doors to serious illness conversations, managing physical comfort, ways of responding to serious illness questions from the person and family, and palliative care best practices in communication. With this training, the health care team will be able to provide optimal end-of-life care for people dying in the coming years.

1 Harasym P, Brisbin S, Afzaal M, et al. Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives. BMJ Open 2020;10:e037466. doi:10.1136/bmjopen-2020-037466

2 Health Canada, Framework on Palliative Care (2018)

Comfort Basket For The Caregiver

In the palliative care books, Integrating a Palliative Approach: Essentials for Personal Support Workers, and Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse, I use the image of a comfort basket to refer to non-pharmacological (non-medicinal) items that can help promote comfort and provide support when caring for a person who is unwell, and when supporting family members and other caregivers. The motto for the comfort basket is to

Respect the individual and individualize the care

The COVID-19 global crisis is stressful for professional and family caregivers. Fears of infection, lack of personal protective equipment, concerns about food shortages (and toilet paper shortages) combined with stress related to social distancing and quarantining are causing many to feel anxious.

One way to help manage stress and anxiety is through self-care.

A comfort basket can be filled with items for self-care. When a person engages in activities that bring them peace, calm, and a sense of being cared-for and of not being alone, their stress and anxiety diminishes.

I would like to dedicate this post to the family and friends whose loved ones are ill with COVID-19 and those whose loved ones are in care and they may not be able to provide care or see them.

Ways to support family and friends during COVID-19

Consider providing certificates and coupons for:

  • Online music services
  • Online meditation, guided imagery, yoga resources and courses…. and perhaps support to help access on the caregivers’ computer or mobile device
  • Gift certificate for meals (take out, delivery or meals that you make for their freezer)
  • Gift certificate for extra hours of caregiver services from an agency or private caregivers
  • Coupon to help with household work and activities for a specified time period, e.g., walk the dog daily for one week, or take the garbage out for one month, or mow the lawn 5 times, or do two hours of errands
  • A group of fabulous teenagers to come and sing to them for half an hour.

The key is to provide items or services that give comfort to the person

Consider creating a comfort basket for the caregivers and family that could ease their anxiety and bring them comfort. Items to consider are:

    • Hand cream, massage cream Comfort Basket with selfcare items
    • Bath bombs
    • Heating bags
    • Gel booties or gloves
    • Foot roller
    • Eye pillow
    • Journal & pen, coloured pens, tools for creative expression
    • Books to soothe the soul – choose topics that interest the person the book is for.
    • Mug with special teas, e.g., camomile, mint; hot cocoa, plus cookies or other delicious treat
    • Candles, candle holder
    • TV subscription to access a wider range of entertainment, e.g., Apple TV, Acorn TV, Amazon Video, Netflix, PBS
    • Noise-cancelling headphones for listening to music or videos when others are resting

What items would you like to receive, or what items have you given that were appreciated?

We’d love to hear your ideas! Leave a comment below

For more information, join the conversation in the Life and Death Matters Community

Read more about self-care for caregivers here

COVID-19 resource: Recognizing difficult breathing and strategies for supporting comfort

image of difficult breathing page 1One of the challenges health care providers are facing with COVID-19 is managing breathlessness or shortness of breath in infected patients.

For some caregivers and health care professionals, it may not be logical to consider applying palliative care principles and practices for managing difficult breathing when supporting people with breathlessness due to COVID-19. Know that applying palliative care principles and practices does not indicate that the person with COVID-19 is dying imminently. Repeat: Applying palliative care principles does not mean that a person is dying imminently. It does, however, mean that you may help the person to feel more comfortable while they are ill.

We’re offering an excerpt from the textbook, Integrating a Palliative Approach: Essentials for Personal Support Workers, titled “Common Symptoms – Difficult Breathing” to assist you when supporting a person with a COVID-19 infection.  This section describes key signs indicating a person is experiencing breathlessness and discusses comfort measures for supporting a person experiencing difficult breathing. We hope that it helps you as you support people ill with COVID-19.


Enter your information below to receive instant access to the text excerpt, “Common Symptoms – Difficult Breathing.”

CAUTION * For some people with COVID-19, difficulty with breathing progresses very quickly and becomes severe. When you recognize that a person is experiencing any difficulty with breathing, regardless of severity, connect first with your local health care professionals for guidance, assessment and treatment options.

This resource should not be considered a replacement, substitute or alternative to seeking appropriate and timely medical care.

Get access to our resource, Common Symptoms: Difficult Breathing

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Preparing for COVID-19 because it IS personal

The COVID-19 virus is coming to a home nearby. How near? And how serious? Even if the curve is flattened, the reality is that people will get sick, and people will die. The deaths could include me or Ted. That is a reality.

This morning my dear colleague Elizabeth Dougherty shared an EXCELLENT article, This Pandemic is Personal, by Dr Ira Byock.

Ira writes that he has graduated into a high-risk group of “elderly people”. (When I checked last, I was 23 and Ted was 29, but we sneezed a few times, turned around, had a wonderful family and some great adventures, and voila, Ted is joining that group of “over 70” in the next few years and I am just a bit behind him.) He writes that 1 in 5 of elderly people who become infected do not survive.

I may not be able to control if I die, but I can control what I do to prepare. 

When I teach, we sometimes discuss the pros and cons of a sudden death vs a steady more predictable decline, a stuttering up and down decline, and a long slow lengthy decline. There is usually a group of people who like the idea of a sudden death. Then the discussion follows that sudden death is difficult for family.

On January 23, 2020, our 30 year old son, Geordie Murray, died a sudden accidental death. I know only too intimately the things that I wish we had done, could have done, would have done, had we known in advance that he was going to die. I know only too well that there are things that Ted and I can do now to decrease the burden on our loved ones, and increase their likelihood of healthy grieving, if we do die “suddenly”.

This time of social hibernation provides us with opportunities to prepare. And looking in the face of death may enrich our living.

This afternoon, inspired by Ira Byock’s article, Ted and I will sit at the table and review our will, organize our papers, share our passwords. We will talk about how we can best connect with family and friends. Then we will go for a walk on our country road and discuss ways to stay healthy.

Please read the article by Dr Ira Byock and then return and comment below on this blog. We need to talk about this.

With warmth, a great big virtual hug,


I could certainly be one of the many tens of thousands of Americans who will die in the next few months…. mainly because I’ve graduated into a high-risk group.

While all adults are at some risk, Covid-19 is far more lethal to elderly people. I’m 69 and my wife is 73. At our ages, upwards of one in five people who become infected do not survive. … Given the anticipated shortage of mechanical ventilators – we’ll need between three to 10 times the number available – and the fact that older patients who require mechanical ventilation usually go on to die, triage guidelines will likely not offer advanced life support to people my age.

…Life is a precious gift, but a fleeting one. We live each moment, but just a heartbeat away from eternity…. I go about my days, filled with meetings – now all by video conference – calmly aware that this could be the last month of my life….

My path forward is clear. In the days ahead, I’ll express my love in preparations. As a doctor, I know well what those will entail. I teach this stuff frequently….I can tell you a lot about what happens in real (this) life after we die, and how we can affect what happens.

I explained that since we’re inextricably connected to others, playwright Robert Anderson’s observation applies, “Death ends a life, but it does not end a relationship.” After you die, the people who love you will grieve. They will miss you and go through a range of emotions when they think of you; which they will do often. They may have regrets or satisfactions or both. Thought of in this light, yes, there’s a lot we can do to affect how people live in the wake of our deaths and how we remain in their lives. 

It’s now time to take those lessons seriously. My wife and I will finally complete our “in case of death” file box. We model ours on the one that my mother left for my sister and me. The day after she died suddenly, we found it sitting next to the telephone in the kitchen of her retirement condo. Ours will include our will, the title for our cars, the deed for our house (not copies, the actual documents), our bank account numbers, passwords for financial and social media accounts, along with instructions about what to do with our bodies and how to access the money we’ve set aside to do so.

Our family has started having Byock Family Visit Zoom calls so that we can visit and grow together through this period of social isolation.

I’m also using my confinement to reach out to people I care about but haven’t had a conversation with in years. Mostly it’s to let them know I value our relationship and to reminisce, but also to leave nothing important unsaid. Since no relationship is perfect, it’s a chance for me ask for forgiveness for past mistakes and transgressions. It’s an opportunity to let others know that I forgive them – any misdeeds and hurt feelings are water under the bridge – and to say thank you and I love you.

Buddhist meditation teachers and seriously ill patients have both taught me that in facing death, we can begin to live fully. I’m going to do everything I can to stay safe and survive this pandemic. If I die, I want the people who matter most to me to know how I really feel. To every extent possible, I intend to joyfully celebrate life and the people I love in the very face of death.

Ira Byock, MD, is chief medical officer of the Institute for Human Caring of Providenc

Original article by Dr Ira Byock available here